Glimpses into living life with an autoimmune disease (Hashimoto's Thyroiditis), postural orthostatic tachycardia syndrome (POTS), postural hypotension and chronic fatigue syndrome (CFS/ME)...ideas, experiences, the struggles, and the successes!

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I love finding new worlds through writing and reading. I am excited by creating new flavours and tastes in the kitchen. I am fascinated by nutrition and healthy lifestyle choices. I adore my my dog, family and friends.

Monday, 10 March 2014

Glimpse into brain fog

Something that a lot of people ask me about or don't understand, is the feeling of "brain fog", which is so prevalent in conditions like Myalgic Encephalmyeltis. Obviously, brain fog is not a scientific term, but it so clearly depicts the feeling.
                                                                  Pic taken from here

Your mind is blanketed with London-like, pea soup fog; so heavy and thick that basic thoughts and processing are as difficult as tightrope walking with all four limbs tied behind your back. Some days you can have clearer moments (in these I take the chance to write my thoughts down for this blog!), and other days, you are embarrassed by the lack of coherent brain function. There is a physical feeling of thickness in your head too; not a headache, but a thick, slow, sludgy feeling.

I regularly am faced with situations when I can't find the word I want and so can not explain myself well, or sound vague or uneducated. I find basic comprehension and memory tasks mind blowingly difficult. Reading a small piece of information on one page and then writing it on another seconds later is impossible, because the information has floated away on a cloud, no matter how hard I concentrate on memorising it. I have been talking to friends and asked a question, and as the friend is answering, I find myself madly trying to remember what I asked! The silly thing is, it's not like there is memory loss as such. For me at least, I find that the information won't connect in my brain when I want it to, but later on, I can think about or remember what I had been struggling to grasp at the time. In group situations, when noise and light sensitivity also adds to the fun, I find that I am like a stunned mullet in the corner, struggling to keep up with the conversations.

Sure, these situations might sound familiar, but are definitely not normal for a woman in her twenties, who looks after her body, rarely drinks, doesn't do drugs, and leads a healthy lifestyle. It is like Alzheimer's is having a practice run for when I reach my nineties.
 
At a recent appointment for acupuncture, the lady who does the therapy for me asked me what I was doing for the weekend. I said that I hopefully would have lunch with a friend the next day. She asked me if the "hopefully" was hoping that I would feel well enough to go, and I said yes.
The following week, I was back at the clinic for a massage. The lady who does my massages said that she had been asked to see if I had made it to my lunch. It was just two days previous, but I could not think at all if I had made it to lunch! I was completely blank. I said yes, I had made it to lunch, frantically trying to think if I had made it! We went on to talk about my aches etc, and she started my massage. I was still trying to think if I had made it to lunch! About 15 minutes later, she asked where I had gone for lunch! I still hadn't established in my head if I had BEEN to lunch, let alone WHERE!!! I named a place I knew I'd been to recently, but was completely foggy trying to think if that was the lunch I'd said I hoped to make on the Saturday! 
We moved past the topic, and then suddenly I realised YES, I had made it to lunch! And no, it was a different place to that which I'd named!! But at that point, I couldn't explain to the masseuse!!

"Yes, I probably made it to lunch, and I am sure I had a great time if I did!"

Brain fog is one of the most frustrating symptoms of Chronic Fatigue Syndrome. It is one of the main issues, next to the post exertion malaise and dizziness, that results in the fact that I can not work at the moment. Under guidance from my naturopath, I take regular fish oil and specific tonics to work towards improving my cognitive function. I also use my brain when I can, to keep it from rusting! I rest, eat well, and try to minimise the surrounding stimuli when I am trying to concentrate. I have always been a list person, and these days, they are my saving grace! I often think more clearly in the evenings, so I try to make the most of that time to read, or chat to family or friends. My close friends and family are aware of my brain fog, and try to help me remember things, or fill out paperwork and the like. They often laugh with me too, because sometimes, that is the only option!

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